“I am trying to understand your rationale for using Isocort in a scientific way.”

I am not using it because the science says it works, I am using it because it works! I am sure there is data that says it helps and data that says it don’t help. There are many people here that have expressed how much cortisone has helped them, some say dramatically.

Many leading doctors treat cfs patients with low dose cortisone.

Dr.Teitelbaum also uses cortisone in cfs patients. It is not a magic bullet, but it is for some, very helpful. What if you found something that dramatically helped people with cfs, it was very safe, but there was no scientific data to back up your experience, would you use it, or would you allow people to continue to suffer until you could find scientific proof that it worked?

For me, I try to find scientific data, but if I can’t and something is safe and helping me, I continue to use it because it works. Scientific data is always flawed to some extent, though I do use it to weigh my decisions. For every study that says something is true you can find a study that says it is false.

So where does that leave those of us with cfs/fm? What I do is I use scientific data, my experience, and the experience of doctors treating people with cfs/fm and other information I can find to determine my protocol and recovery plan. I understand that its your job to filter things scientifically, and I can appreciate that.

Believe me, I to, would want nothing better than to be able to follow a proven scientific path out of this disease, but there isn’t one to follow yet. For many of us that are ill though, we just want to get well and just using science can drive somebody crazy because of all the different views on what causes cfs and how to treat it.

A purely scientific approach to our illnesses, for most of us, will not get us where we want and need to be. If we wait for the science, we could die of old age before there is a strong consensus on treating cfs.

You also wrote that "cortisone is not a systemic anti-inflammatory. This is one of the reasons why it is contra-indicated for SLE" According to the Lupus foundation of America, at least 4 corticosteroids are used to treat SLE,including hydrocortisone.

You also say that "cortisone is not a systemic anti-inflammatory" How can that be true when it is regularly used for asthma, arthritis, colitis, etc. I don't understand your thinking here. With much respect, Jim
[This Message was Edited on 03/03/2013]
[This Message was Edited on 03/03/2013]
[This Message was Edited on 03/07/2013]

According to the Lupus foundation of America, at least 4 corticosteroids are used to treat SLE,including hydrocortisone.

Yes but for specific inflammatory flares not for systemic use. Many people with SLE have been seriously worsened by the general, incorrect use of corticosteroids. They do not improve the course of the disease.

You also say that "cortisone is not a systemic anti-inflammatory" How can that be true when it is regularly used for asthma, arthritis, colitis, etc. I don't understand your thinking here. With much respect, Jim

Once again these are local inflammatory problems.

I have no issue with the proper use of cortisol and its derivatives. I have no problem with its use in some people with fatigue pain related problems but I have not seen its successful use in ME/CFS.

You and others may be benefiting from using it in low dose form and that is good and relatively safe, I suppose. Also I agree with Sarah Myhill, that if cortisol is shown to be significantly low then try it, for a while but not permanently. I know she would not use them long term.

Regarding Dr. Teitelbaum, the full story needs to be considered as well the recent studies by Johns Hopkins which no significant value overall.

While I still disagree about cortisone not being a systemic anti-inflammatory, I'm not going to go into detail about it.

What I do agree on is the long term use of cortisone is not necessary, if the underlying need for the cortisone is treated. My goal is to treat the underlying causes of my symptoms so I don't need to keep taking the cortisol.

Besides, I don't think I can afford to keep buying the Isocort, it's expensive. My guess is that's probably Dr. Myhills approach as well. To treat the underlying cause for the need of the cortisone.

I also agree that low dose is the safest way to go ie-(20mg/day or less). The article you point out clearly says this. Take care, Jim